Bloodletting

I left the apartment with grim determination. It would be done today, come hell or high water. Just a week prior I had gone down to the lab for blood tests and after 8 or 9 pokes administered by every white coat, they gave up and sent me away. I was off to a different clinic a bit further away, but still close enough for me to go in my power chair. With Joe walking along beside me, we were mostly quiet. These aren't easy days for me.

We arrived at the clinic and were given a number. Mercifully there was room in the waiting room for my scooter and I sat and waited. Waited meaning, of course, stewing in anxiety. When my number was called I requested the most distant room as the way it was configured I'd have the most privacy. I explained to the nurse that I'd been a week before to a different lab and about the pokes and about the failure of them to get even a drop of blood. She nodded and said, 'Well, let me take a look.'

She tried all sorts of different places asked me questions and listened carefully to my answer. It was a thorough examination of every possible vein. Then she said, 'I'm going to try and get this first go, so let me take my time.' I smiled, ruefully (really I did) and let her scour my arms for veins. Then a little light bulb went off in her head. She grinned at me and said, 'I think I know what to do.'

She got a needle. Felt for the vein one last time. Put the needle in and then filled the vials with blood. First try, first hit. This NEVER happens. I was so surprised that I kind of missed what she said but I think she said she used a 'baby needle' because the vein was small.

Whatever she did, it was wonderful. Her manner was such that I'd have forgiven her having to try several times. She really WANTED to make this OK for me. It was like she hadn't forgotten that she was poking the arms of people who have sensibilities.

It can be rare to find those who work with people who remember the humanity of those in their care. Well, she did.

And this human, was grateful for her kind attention.

Drop In For A Visit ... Say Hi From Me

Many years ago, well in fact, many, many, years ago, I formed the impression of niece Shannon as being someone who was going to grow up and be very good with words. In fact, to encourage her young literary pursuits, I submitted a poem she wrote to the Toronto Sun's Poetry Corner. Her poem was published and she won some kind of prize for her work. I don't remember the prize but I do remember being all excited when it appeared in the paper and then Joe and I folded up the newspaper and sent it, along with the prize to Shannon.

Then a wonderfully talented little girl, now a wonderfully talented woman. We reconnected some years back when she made a comment on my blog. It has been wonderful getting to know her again and becoming friends. I've called her a couple of times to chat about the blog or about a particular post, I trust her opinion on things literary and I trust her to be able to give me feedback which is both true AND kind. That's a skill set we all should strive for.

Well, yesterday I went to her blog and she had posted something that I just loved. I thought it one of the best pieces of writing I'd read in some while. She writes a story that immediately makes you want to pick up the phone and call her to tell her one of your own stories. When a writer can write about herself and have you think, deeply, about yourself - that's art. Some of you will know her as a regular commenter here on Rolling Around In My Head. I'd like to invite you to drop by and read Shannon's blog post.

Please say, 'Hi, from me.'

Change Begins: You Tube 4

(if you cannot play here, search Hingsburger on YouTube and then select the video titled Change Begins)

(Transcription by Tessa.)

Note: If you've been watching all the videos you will note that I'm telling stories in chronological order starting at my first job, this story is the second told from my second job, next story will be from my third job. It's kind of a way of making sense of my career, and my growth, to me - and hopefully it will mean something to you along the way.

Change Begins

I was soon to leave the institution. I had received a job offer in the community and was about to move to community services where I would spend the rest of my career. And as I was driving to work this particular evening, it was to be an evening that would have profound effect on my career, and certainly on the latter portion of my career. It was a very dark night, and it was very cold. I had moved to Ontario from British Columbia where winter was wet, and here winter was white and it was very white and very very cold.

As I pulled into the institution, I looked at it for the first time with different kind of eyes because it was a dark night and it was, it was warm lights that come out through the wards and I saw people moving behind, and it did seem an odd kind of ‘home’, but I was wrong, and I was proved forever wrong that evening. Because I walked onto the ward, and it was shift change and there were all sorts of things happening and people were communicating what was happening during the day and what was expected to happen during the evening. It was least favourite of the shift rotations because there was a staff there who frightened me.

She was a big, brassy, bully of a woman and she ruled the ward with fear. She was not in management and I doubt would ever be, but nonetheless, she had managed that ward. And working with her was very very difficult because one tip-toed around her mood and one did everything one could just to make sure that she was happy because if she was happy, then we were happy. And if we were frightened of her, one can only imagine how the people with disabilities on the ward truly felt about her because I think in many ways, she just hated them.

Well, it had gone actually, fairly quietly that whole shift and people were in bed as they should be. And the way the ward was constructed, cause it was a co-ed ward, there was two big bedrooms at the back of the ward, the males on one side, females on the other.

I was in the office doing a little bit of paper work when I heard this incredible scream, so I came out of the office and I came around to see what had happened. And I noticed a woman whose name was Debbie and she was being pulled along by her hair by her hair by this staff who was furious, and there was fury written all over her face and all over her body.

And this was Debbie! And Debbie was a woman with a disability that I truly liked. I like her because she... she had this incredible back bone. She hadn’t been bowed by institutionalization. She hadn’t let the captivity of body take over her mind in any way. She stood toe to toe with us as staff, and she refused to see us as her superiors – she saw us as her equals. And she wasn’t a behavior problem I any way. I mean, she didn’t throw tantrums or break things or cause all sorts of problem, she was just resolutely our equals. She was just an astonishing person and needless to say, the staff hated her, or this particular staff hated her.

I didn’t know they, where they were going because the time out room was in the other direction. They were headed over towards the door, and the door was on the side of the word and it was locked and it was almost always locked. And the door lead out only into this little play ground and it was a playground that was fenced off and if you went out there you couldn’t leave the area, because the fence was tall and it was locked.

And the door itself was locked and when they got to the door, the staff unlocked the door and just, just threw Debbie out And it was cold, it was really really cold out there. And I saw the staff pull the door back and lock the door, and Debbie was on the other side and it was cold. It was really really cold and all she was wearing was this, this nightdress and she had bare feet. I approached the staff and I said, “You can’t do this. I mean, it’s cold outside. You have to let her back in!”

I was told very quickly and very firmly that I needed to just back off. Because this was none of my business, and this woman Debbie – she was, she was going to learn her place. And what, what lesson do you learn, just standing outside in the cold. I mean what lesson do you learn about yourself? You might learn lessons about the world, and you might learn lessons about the staff but you certainly learn nothing about yourself when you are standing in the cold and you are freezing and the door is locked and there is an angry woman on the other side refusing to let you in.

And I begged her, I begged her to let her in and she was just furious now with me for questioning her. I didn’t know what had happened and I didn’t know why Debbie deserved this. Well, may not, but I didn’t think that anything deserved being locked out in the cold when you only had a nightgown, and you only had bare feet. Eventually the door was unlocked, and I tell myself and it’s probably not true, that maybe my protest made that a little less long than it would have been if I hadn’t been there.

You should have seen Debbie cause she walked by me, and her back – it was just rod straight. I was cheering inside because she walked with such incredible dignity that she showed up this fury and this bully of a woman.

I couldn’t understand why everybody acted like nothing was happening, like the other staff, they didn’t do anything. These were good people! These were good people but I could see when I looked at these good people – they were afraid. They were afraid of the staff, they were afraid of her violence, and they were afraid of protest and losing their jobs or whatever might happen if one did something, and stood up. It was horrible. And I went home that evening and I found it very difficult sleeping because I had to sort of face that this was my profession and this was what I had chosen to do and this is what happens in places like this.

I went to work the next day and I had made the decision that I was going to report this. So I did. I chose one of the supervisors who I truly trusted, and I think that is what made this so difficult. We sat down together in a private room and I described to her what had happened the evening before, and I was clearly very upset.

She was understanding at first and she told me that these things happen in places like this and that I needed to have a thicker skin if I was going to survive in human service. And then... her voice went cold…as cold as it had been the evening before. And she told me that I was never to make this kind of report again and that I was never, ever, EVER to bring this to her attention again or I would be in significant trouble.

Well thank heavens I was going to be leaving that job, and when I left the institution, I left very very troubled. And over the next many years in Human Services, I have to say that is not the only act of violence that I witnessed, against people with disabilities. And in the first instance, in the institution, I spoke up but in many instances, I did not. I was part of the silent group that saw what happened and did little about it.

Then years later, decades later, I was in a hospital and I was facing a catastrophic illness and I was in the recovery part, and I knew I was going to be ok and I was thinking about my career and what I had yet to do, and I remembered Debbie. And I remembered the debt that I owed to her for not somehow, somehow making that whole thing better, and being more firmly on her side. And all of the other people with disabilities that I had let down over the course of the years that I had let down because of silence, or inaction or simply turning away. And I just didn’t want to do that anymore and I decided that what I wanted to do was really look at the issues that really made people with disabilities vulnerable in Human Services. The fact that staff have absolutely almost unchecked power in their relationship to people with disabilities and that good staff, good staff feel disempowered and feel somehow that their voices are going to lead to them being in trouble, that THEY will be abused by the system if they raise the issue of abuse TO the system.

And then the fact that the system itself is loath to change, that the system itself would rather have abuse occur within it, than to deal publically with the issue of abuse. So for this to happen to people who are in care is a tragedy, but for change not to happen is a willful decision. So I decided that what I wanted to do was spend the rest of my career dealing with abuse as an issue. That is what I have been dealing with for the last three years.

It was just today that I sat down to write the opening of a book that will document a three-years journey here at Vita Community Services regarding what we have done to confront the issue of abuse within the organization and to radically alter the organization to make it a safe haven for people with disabilities to live in. And I am proud of that work, and I am proud of what I am about to document, and I am proud of the fact that there were people who were willing to take a chance to make these changes.

So thus began the writing today.

You're So Vain ...

No! I'm not going to blog about you.

I simply refuse to.

There we were having tea and conversation with Belinda and Susan. With our schedules we manage to do this three or four times a year and I always look forward to the get togethers. We laugh a lot. We share a lot. We make each other think. We distract each other from thinking. It's a perfect couple of hours.

Today before we left Belinda read us a passage from a book that was really meaningful to her. I loved it too, both because of it's overall message but also because of it's 'pro-disability' sentiment. It lead us to conversation on a bit deeper level.

Suddenly, perhaps because I hadn't had a blog moment all day, a guy at another table gets up and inserts his opinion into my conversation with the others at the table. Not only is it an opinion that I personally find a bit revolting, his intrusion was incredibly intrusive. It also signalled that he'd been sitting there listening to us ... well, OK, I listen to others, too.

On our way out someone said, 'Well, you've got your blog post tomorrow.'

And I thought, 'Oh no, I've got some control.'

So I'm not blogging about what he said or how it upset me or how typically dismissive of the disabled point of view it was. So I'm not going to tell the story of how a jerk felt that he could just co-opt a guy in a wheelchair talking with his friends. So I'm not going to give him the space.

Hey, you, asshat, You probably think this blog is about you.

Don't you.

Don't you.

Don't you.

It Was Awesome, Really

Last night.

Nothing happened.

It was just a regular old Friday evening. We got home from work. We went shopping. Dinner was made. Television was watched. Both missed final Jeopardy. Snuggled into bed to read. Fell asleep.

Nothing happened.

But it was a wonderful evening.

I woke up this morning and lay in bed for a little while. I've been thinking about 'the day' on and off for a couple of weeks now. I had been planning to set down the story of my own disability, how I went from walking to rolling in about four days. So it's been playing through in my mind. Sometimes I write things spontaneously, like today, but other times I need to mull through the story first. It's hard to understand the flow when you are on the boat.

So I've been thinking about that day. And I remembered my right leg losing the power to hold me up. Of falling. And falling. And falling. I remembered laying in bed and wondering if it was all over. Wondering if there would be no more days made special by their very, wonderful, comforting ordinariness. This fear is probably at the base of so much despair ... I'll never be me again ... I'll never live another normal day.

Even though I knew people who fell, and laughed. I knew people who rolled and contributed. I knew people with disabilities and saw how both their personhood and their disability folded up into a uniquely cool package. But it didn't matter. That was 'special them' this was 'only me'.

I didn't realize that it didn't take courage to turn disability into normality. It didn't take, God Forbid, spunk to turn extraordinary circumstances into wonderfully ordinary days.

It only took time.

A New Day

Now, finally, we can begin to grow, mature.

For agencies to provide the best care there has to be a flow of communication between service giver and service recipient. There needs to be a process of feedback from the member base as to the success or failure of the care which is offered. This is not a process to be feared, instead it is to be encouraged. Staff want to do a good job, but getting little feedback or false feedback does little but entrench what is into what always will be. I remember really wanting, almost begging, someone with a disability to give me feedback, to tell me what he really wanted. I knew we were all missing the boat. But he just smiled a subservient smiled and assured me everything was all right.

But then, on reflection, it made sense to me. The very people being asked to give feedback are provided care, service they need, from the very people they are being asked to be critical about. We have all had the experience of having a bad teacher at school or a bad supervisor at work, we all feared speaking up because the target of our displeasure had power in our lives. We'd rather put up with bad treatment than risk getting worse treatment. Silence is a result of hierarchy and power imbalance.

Imagine this:

A man with a disability likes his staff but wishes some things could be different between them. He's unsure of how to speak up but knows that if he wants things to change he has too. He attends and abuse prevention class taught by two people he trusts, he learns about abuse and he learns about speaking up. He speaks to the two teachers and says, 'I like my staff but I want him to be a little nicer to me and I don't understand why he does some of the things he does and makes the decisions that he makes.' When asked if he wants help to discuss this, the individual with a disability thinks and then says 'yes'. After a chat with the agencies Program Director, she meets with the member and the member makes it clear that he likes the staff, that he doesn't want the staff punished, that what is happening is not abuse, that he just wants a few changes. The Director says that she will meet with his staff and the member says, 'I'd like to be at that meeting.'

The meeting happens. The member expresses his concerns to the staff who is surprised but receptive. They work through some things, each is misunderstanding the other a little bit. It only takes a bit of jigging for them both to feel listened to and in sync. The meeting ends with them agreeing to review how its going in a couple of weeks.

OK, get this. This happened this week at work.

I believe that this happened because there has been several years of work to make sure that people with disabilities feel safe. Our focus has been on abuse prevention and the development of advocacy skills amongst the members of Vita. As we did this work there was a vague hope that the sense of security and the welcoming of voice would make it possible for people to begin to discuss, not abuse, but the quality of their care. How we interact and treat each other. I wondered if we encourage voice it would mean that people would not longer need to use behaviour to communicate. We all know that problem behaviour is a means of communication - and perhaps the only viable one when one is at the bottom of a very large hierarchy.

We realized as we discussed the ramifications of what happened at Vita that we've been seeing signs of this coming within the organization. As we have increasingly involved the self advocates in the life of the organization there seemed to be an interesting shift. It's as if our members got in an elevator and pushed the up button. Their skills in using voice and speaking up meant that there has been a shrinking in hierarchy and with that an reshuffling of power.

And none of it has been scary. That staff, can you imagine how good he felt. Someone in his care trusted him enough to give him honest feedback without fear of punishment or reprisals. OK, hands up, how many readers would feel that they could do the same with their supervisor. Ah, wouldn't you like an environment of safety where your voice was welcomed.

Some of our journey towards becoming a safe agency has been difficult and we made many mistakes. But we carried on believing that the purpose of safety was more important that the frustration of error. And now, a man comes forward and says, 'let's talk, reasonably, about my care.'

He could only do that, he would only do that, if we had demonstrated that we actually did care about his care.

Another Post!

Hey, for those readers who can cope with two Hingsburger posts on one day, I wrote a piece, for personal reflection and sent it to my friend Belinda. It's on faith and my relationship with God. Belinda asked if she could post it. I said, 'Sure'. It's up over at Belinda's Blog if anyone has a mind to read it, drop by and say 'Hey' to Belinda.

God Loves You ... No Not You ... You

I am constantly learning that for most non-disabled folks the default mindset regarding disability is tragedy. There seems to be some kind of genetic need to understand difference as abhorrent and wheelchairs as the symbol of captivity. I keep running in to these attitudes, the attitudes that completely shore up the hierarchy between those who walk and those who roll, or those who talk and those who sign, or those who think quickly and those who ponder slowly, or those who love chaos and those who require sameness. A hierarchy that leaves one feeling somewhat pleased to simply not be the other. And it always surprises me.

Perhaps because I am so introspective, which is a fine way of saying 'completely captivated with the experience of being me' that there is little room in my life to look at the lives of others with either a sense of superiority or a sense of envy. Others lives are simply others lives, they become fascinating to me only in the degree to which our lives overlap. Other than that they are just foreign things. Most people's lives are simply movies I have not seen. This may sound cold, but I think it's more common than people will admit.

Anyways, this is all to say, 'I don't get it when people don't get it.' An example. I am in a store yesterday. I am reaching for something quite within my grasp. A fellow shopper approaches, eyes full of helpfulness, and says, 'May I give you a hand?' I was feeling the spring in the air and answered jovially (as only fat people can truly do) 'No, but I'll take your legs.'

I thought that funny and mentally noted to tell Joe. But the person who was at the receiving end of Hingsburger Hilarity didn't laugh. She said, 'Oh, my, I'm so sorry.'

WTF!!

It was a joke. Clearly. A joke. Didn't she see the delightful twinkle in my eye. Those who know me can attest that I have a marvellous and unmistakable twinkle, and my eyes were twinkling like a diamond in the freaking sky. Didn't she notice the devilish grin? Those who know me can tell you that I love my own humour and have this little grin when I get off a good line, and I had that grin, the one with the vague hint of dimples. So it was a joke in tone, in body language, a joke.

But instead of joke she heard, her internal prejudice jumping up and down saying 'HE HATES HIMSELF AND ENVY'S YOU, HE WISHES HE HAD YOUR LEGS, HE SPENDS HIS LIFE WATCHING YOU FROM THE WINDOW AND WORSHIPING THE WAY YOU MOVE IN THE WORLD G O D TRULY L O V E S YOU'.

Man. She walked away practically wanting to hug herself.

Shit. She walked away not challenged to think differently but reinforced to think stereotypically.

Harumph. She didn't get the joke. And this is perhaps the saddest thing of all.

Poco Hor: Transcribed

Hi all, this is not an extra post, Tessa has transcribed Poco Hor, the first You Tube Video. This catches up all up. Thanks Tessa! Imagine, she did this without being asked to ... lovely huh?

Poco Hor

I met Philip on my very job, on my very day. I remember coming into the ward, and I was very nervous of course being new staff in an institution serving people with disabilities. Back in those days there wasn’t much in the way of community service so I took a job where I could, and the Institution wasn’t all that far from my home. I remember walking into the locked ward and feeling that I wanted to do something significant. This was my job, this was my career and it was a passion for me to work with people with disabilities.

One of the very first people I met there was a guy whose name was Philip, I remember him very very clearly because when I came through the door into the ward, Philip looking over at me and he recognized me as a new face and he called out to me. He was very very excited and he stood at the window and he called out Poco hor! Poco hor! So I went over to Philip knowing that clearly from his language that he wouldn’t have a great deal of speech, but I looked out the window at what he was pointing at and I really couldn’t identify anything that would be a Poco hor. So I looked and I looked and I looked over at him and he was so excited that I was standing there with him and he, out the window and he kept pointing and Poco hor! Poco hor! So I stood there for awhile and I didn’t understand what he was saying and I apologized that I wasn’t getting his message.

So I spoke to some of the other staff, the staff who had worked with him for a long period of time, and they told me that this was simply a habit of his. That he would stand at the window and call out Poco hor! and that had done everything they could to figure out what Poco hor! meant and they just figured it was just nonsense talk and it really didn’t mean anything. But I had trouble believing that and the reason I had trouble believing that was that Philip had clearly meant something, He said it with such enthusiasm and such a joy that there was something out there that had caught his eye.

And you know, if you actually looked out the window, it was a beautiful view because the institution was built on the side of a hill and you looked out and there was a small river that ran by and there was a very pastoral scene with cows and fields and and those sorts of things. It was indeed pretty.

So I had been to university and I had studied about data and collecting data and so forth so I determined that I was going to collect some data. That what I was going to do was every single time that he called me over and he called out Poco hor! And I would stand there and look with him, that I would look to see what was there, and then I would go to the window during periods of time that he wasn’t calling out Poco hor! And see what was not there, to see if I could determine what was there when Poco hor! was being said and what was not there when Poco hor! was not being said.

So I took my piece of paper and I went over and I think he was even more excited that I was writing things down and I stood with him and I looked out as he called Poco hor! and I could see the field, and I could see the fences, and I could see the cows and I could see the river and I could see all the things that were always there but I couldn’t see anything that was never there. So, then I would go over to the window when Philip wasn’t there and he wasn’t calling out Poco hor! and I would look at the scene again, and I would look very very closely, like you do with those puzzles to determine what is different in this picture than the picture before. And I really couldn’t see anything.

Well I continued on with this for a long period of time, collecting the data, trying to figure out what was there, and what was there on a consistent basis, and what wasn’t there and so forth. But the difficulty was that every time that I went to the window when Philip wasn’t standing there to look to see what wasn’t Poco hor-ing out there, he’d come and stand beside me and get all excited and say Poco hor! Poco hor! Well, after a period of time I spoke to the other staff and they’d all thought that I was very silly and very naïve being a brand new staff, and they appreciated the enthusiasm but they knew because they had determined over time that Poco hor! really didn’t mean anything.

Well, I finally gave up, and the data really didn’t show anything. And I was really disappointed because here I was, brand new, brand new into the field, brand new into the life of somebody with a disability, and I wanted to make a difference to that individual.

So I eventually told Philip that I wasn’t going to be going over to the window anymore, that I don’t think that it really meant anything and, and I stopped-- I just stopped. And I started doing what all the other staff did, because he would look at other staff and he would call out Poco hor! and they’d all say “Philip don’t be silly. There’s nothing out the window. You know that.” And I remember the first time I said to Philip, “Philip don’t be silly. There’s nothing out the window. You know that.” just like all the other staff did, and there was just a little bit of hurt on his face.

And you know, I left the institutional and I moved on into a career and all that and I forgot about Philip. And then during the period of time that the institution itself was closing, I heard that Glendale was closing, I was thinking of my memories there. And one of the very first memories I had was my memory of Philip and him standing at the window and calling out Poco hor! and and I thought it was kind of funny and I thought it was cute so and I decided that I was going to write the story of Philip and Poco hor! and how he would stand at the window and how he would call me over, and how he would trick me with his Poco hor!

And then, I sat down at this very computer where I am sitting at right now and recording this, and I started to write the story of Poco hor! and about midway though, I stopped and and I got tears in my eyes because for the first time after all these years, I understood what Poco hor! meant. Because Poco hor! wasn’t something outside the window. Poco hor! was something very different. I think what Philip was saying, when he said Poco hor!, was please come stand at the window with me. Look out, it’s a beautiful view. Please come stand at the window with me. I am feeling lonely and I want your company. Please stand at the window with me. I never understood what Poco hor! mean then. I do now. And I wish somehow, that there was a Philip in my life to apologize to.

Lost In Space

Where is it?

whereisitwhereisitwhereisit ...

I'm of the age where I lose everything but weight. Things that can't be lost ... I can lose. Things that I should never lose ... I often do. Join me as I take you through a list of things I manage to lose - am I alone in these.

10) Emails. Kali a reader of this blog wrote me her address so I could send her a bag of President's Choice Louisiana Hot Sauce chips. I bought the chips then went searching for her email, gone. I searched by name, by topic and finally I went to the day that it came it. It's just gone. Kali, if you don't mind, could you send me your address again cause I've got this damned bag of chips sitting here taunting me.

9) A quote in a book. Used to be I could pick up a book and find a quote because I remembered about where it was in the book, which side it was on and about where it was on the page. Now, forget it. I'll dig for it but never find it. I can't search the web for it because I never get the quote quiet right. The damn Internet isn't good on 'things people almost but never did say'.

8) Placement in time. I'm completely lost. I've lost all sense of the flow of time. I realized that I am now only two years old. Everything happened 'a couple years ago'. I can be talking about graduation from high school, when I first published a book, when I last saw you. 'A couple years ago,' is a wonderful phrase because it sounds lucid and masks a complete loss of life's continuity invisible.

7) What I was looking for a minutes ago. I'll be searching desperately for something then blink, blink, what what was I looking for. I can be just about to type something into a search engine, just about to rip apart a desk drawer. Gone. Lost. Nada. No more.

6) Sense of proportion. Why worry about something little when you can worry about something big. It's a waste of worry time to put things into proportion, true, but I don't even know proportion. Never been introduced to it or had it over for dinner. I've had it's twin sister Pro Portion - which is how much an athlete pie eater can put away ... but proportion, nah. You know making mountains out of molehills ... well, they invented the word catastrophization to describe ME.

5) Sense of propriety. The older I get, the more I think that farting is a right. Who made the rules about farting? I mean really, CAN YOU HOLD IT BACK? I can't. Maybe it's an elasticity issue, but for me, a fart is simply smelly wind. If that's the worst that life throws at you, you live a blessed life. I heard that sometimes people divorce over farting. What, get a sense of proportion!

4) Spelling of words like propriety. I used to be able to spell. But with spell check, why? I just type along and when I get to a tough word, I just give it my best shot and let the computer pick it up. It's got to have something to do. Really, it's kinder. Trouble is, half the time I forget to spell check. Oops.

3) Phone Numbers. I've been working at Vita for three years and don't know the phone number there. It's programmed into my phone. Even so I can still tell you Joe's phone number from when we were both in grade 12 and I was smitten. Can run that number off, but don't know my apartment phone number. Know the cell, but the apartment, who calls there?

2) Socks. Yeah, I had to.

1) Ummmm Ummmm

Patty: YouTube 3

This week the YouTube Video has been transcribed by wonder niece Shannon. Out of the blue she sent an email offering to do these every now and then. This way, between she and Tessa, the content is made more accessible, I deeply thank both of them, most particularly Shannon this week.

Patty

By Dave Hingsburger

I left Victoria and moved to Ontario where I was to work in one of Canada’s largest institutions. I didn’t know it, because they had interviewed me over the telephone for the job, and when I arrived to find this absolutely enormous building where the main corridor was a kilometer long, I was absolutely astonished. So I went to work and I walked into the building and it was quite a different feeling from the institution in Victoria, because while Victoria was new and built on the side of the mountain this was – this was not new and it was – it was built on this huge flat plain and it was just this enormous, enormous building.

And I went to work on a ward for people who were deaf, and I was hired there because I had come up with a program for teaching communication to a guy with an intellectual disability that was really successful in Victoria. So when I went to work there I didn’t know any sign language so I set about doing that, and was really interested in learning sign and enjoyed the social aspect of being there and meeting new people.

The folks on the ward were a very very disparate group. Most of them were very able people: a few had physical disabilities as well, but there was one in particular whose name was Patty. And Patty was very significantly disabled -- which is to translate literally into ‘very significantly neglected’. And she was always the last to be included in...the last to be fed and the last to be considered in any of the activities that we were doing because she was so much more disabled than were the other folks that we were working with. And while they were able to demand of our time, Patty seemed to be quite comfortable in just sitting alone on her bed and really not participating or taking part.

And I remember sitting around with a bunch of the staff one evening and we were talking about various approaches to people with disabilities and so forth. And I had come out of university and studied a lot about behaviourism and had come to really believe that people with disabilities, no matter how significant their disability, could be taught something. And they made fun of me because of course I had still not completed a full year’s work with people with disabilities and was seen to be very very naive.

And I – I said “Well, take Patty for example: I betcha I could teach her something.” Well the fellow that was her primary counselor said that he had tried several different things with her and that she was just functionally too low to learn anything.

So I set about the challenge of teaching Patty.

Well, what I first did, because of course I was a born behaviourist at that point and – and I was really looking at the things that she liked – because once I knew what she liked I knew what I could use as a reinforcer – and what I noticed of course was that she liked food. And in amongst the food that she liked, she liked sweet things. And in amongst the sweet things that she liked, she liked chocolate.

So firstly we had something in common, and secondly now I had a tool to teach. So I went and I got from one of the wards for children I got these puzzles, and they were the wooden puzzles that were shaped in squares, and they had like a horse and a duck and a barn and a cow and so forth, and they were just one piece that would fit into the larger puzzle. So I thought, Well I’m gonna teach Patty how to do this puzzle, and when I showed it both to her primary counsellor and to everyone else around they just said that that was absolutely impossible to do. So I went and I got Patty who was sitting where she always sat - which was on her bed where she would be sitting for hours and hours at a time - and I brought her to a table with me and sat her down beside me and - and she looked at me with a great deal of shock. I think she just was surprised to be considered and surprised to be the only one and not one of a group.

So she sat there next to me looking at me with a bit of curiousity and I immediately knew there was somebody inside there, because there was somebody who noticed that there was a difference between sitting on a bed by yourself and sitting at a table next to someone else.

So I put the puzzle in front of her and she wasn’t particularly interested in the puzzle, she was – she was much more interested in me: who was this guy that was sitting next to her and who was this guy that was talking to her.

So I distracted her by giving her a small bit of chocolate and she was immediately happy because she had the chocolate in her mouth and, and she had somebody sitting beside her and talking to her. So I got her to take a look at the puzzle and then what I indicated for her to do was to lift one of the pieces, one of the big pieces out of the hole on the puzzle and when she did so I gave her a little bit of chocolate. Well she eventually cleared the four large pieces out of the larger board and she had by then earned four pieces of chocolate. She understood immediately what it is that was expected of her and when I put the puzzle pieces back in she immediately grabbed at them and she immediately took them out. She no longer wanted the chocolate at this point because now she was engaged: she was doing something that she could do and something that she seemed to be enjoying doing...as much as taking puzzle pieces out of a board must be much more interesting than sitting for hours on your bed.

Well, after a short period of time I wanted her now to put the puzzle pieces back in: now this would take a lot more work on her part because she would now have to orient the pieces in order to get them to fit back in to the cutout shapes. And you know what: she did it. I mean, we’re still on our very first teaching session of somebody considered profoundly disabled and somebody who had been profoundly ignored.

So I continued on with her and a few people gathered around to watch and the interesting thing was they weren’t so much excited as they were angry. And I think they were angry at me and I think they were angry at her: because how dare I, a new staff, come in and show them that somebody who they thought couldn’t learn, actually could. And I think that they were angry at her because I think that they thought that she was somehow hiding – hiding her intelligence in such a way that they hadn’t found it.

Well, we continued on and over the next several days I taught her how to put that puzzle together and she started to look at me with a great deal of anticipation, and I started to look for another job.

There was just no way that I wanted to continue working in the institution like that and there was just no way that I wanted to have...a legacy working with people who were locked away simply for the crime of difference. And I worked with Patty for a little bit longer and I couldn’t really get anybody interested in doing any of this work with her because ultimately, they said, it didn’t matter. Because doing puzzles didn’t change, as they saw it, the quality of her life and she wasn’t more able...and she wasn’t more able to tie shoes and she wasn’t more able to pull up pants and she wasn’t more able to do any of those things.

And I tried to make the argument that if she could learn to put a puzzle piece in, well then she could learn to do those other things as well. But...they didn’t think so and when it came time to leave and...pack my bags and leave from that place and go on to my next job I was...I was wondering about the ethics of what I had done because it seemed like I had gone into a place and I had awakened the humanity of another human being only to desert them: to leave them in that place and to leave them with nothing.

Because I think it’s, it’s much more difficult when you know that there is chocolate and puzzles in the world to now not have chocolate and puzzles. I think it’s difficult to have somebody who sits beside you and talks to you and then not have someone sit beside you and talk to you, and even though I had showed them up and even though I had demonstrated that behaviour therapy had the capacity to teach, I’m not so sure...that I learned the lesson that needed to be learned and that I understood what this meant to Patty and what this meant to me and what I should have done differently.

Aiming for A 10 Today

On Friday I was picked up by the bus and was being strapped in for the ride to work. The driver surprised me by saying, 'I'm taking you up to Vita, right?' I was taken aback because few of the drivers know of the organization just by it's address. He then told me that he used to drive for another company and for three and a half years he drove several of our members to the day programme downstairs from head office.

Just as he pulled the last strap tight he said, 'Beautiful girls work there, beautiful.'

I nodded. I get a wee bit uncomfortable with discussing the physical attributes of fellow staff. I may notice that some are young and attractive but I simply won't say it. There's this thing about heirarchy and power wherein I think it's best to just wrap yourself in boundaries. Safety for all means that those in power govern themselves well. So, I just nodded.

On the ride up we were all quiet and I thought, maybe, I'd come off as a little cold. So when the driver began chatting again about the old days driving up to Vita he again said, 'Such beautiful girls there.' And I said, 'Yes, they are pretty.'

He said, shocked, 'Oh, yes, I guess they are pretty.'

'Pardon me?' I asked.

'English is not my first language and sometimes I say things wrong. I did not mean pretty. Pretty doesn't mean anything. It takes kindness to be beautiful. The girls there, they are full of beautiful.'

I smiled and said, 'Every day I get to go to work and have the opportunity to spend eight hours being beautiful.'

He laughed and said, 'Me, in my job too.'

Perhaps a Vantastic Day

Today may be a big day in the life of Hingsburger:Disabled.

Through a complex series of relationships, it turns out I'm only a couple of degrees of separation from a wheelchair van that needs a new home. I've been wanting a wheelchair van for a long time. I've looked and looked but the cost is so very high, outside our reach. Well, this one is a bit older, OK mileage for the age of the vehicle and has a newly renovated hydraulic lift.

After a couple of calls and a couple of messages, I managed to speak to the woman who is selling the van. She spoke briefly about buying it to transport her husband and then, suddenly not needing it any more. I didn't ask. I could tell. We stayed on the subject of the van and ramps and wheelchair sizes.

Joe is going to go after church this morning to take a look at the thing. If it looks good, he'll drive it down for me to look at and for us to ensure three things. First, I can get in it. Second, the chair can get in it. Third, it seems sturdy enough to do some short hauls up to Ottawa and places around here where I'd love to take my power chair or my scooter.

I'll ask all of you to cross your fingers that this works out. My quality of life might, quite literally, shift into high gear.

To A Blog Near You

Joe and I are vacation planning. We are thinking of taking a whole week, maybe two, off and heading out on the open road. We really rarely vacation. We get enough travel from the lecturing but this time we are a little more excited about the idea because we are 'thinking disabled' as we make our plans.

Since I became a wheelchair user vacations just seemed too difficult This is because we kept thinking about 'old vacations' the ones that we used to take when I was upright and Joe's bladder had some elasticity. But our old favourites just don't work any more, New York City is hell in a wheelchair. They cut corners when they cut curbs and man trying to make it along on a sidewalk when your eyes are elbow level is a frightening experience. We still love to go to NYC to work, but it's not a place to 'hang' for a few days. San Francisco? Yeah, all Joe'd have to do to collect the insurance is lose grip of my chair on one of those hills. Not exactly what we'd want to do.

I mentioned the idea of a bit of a vacation because we took a really successful trip down to Disney land last year and thought maybe we could do something again. I'm not up for another trip to the Mouse House so what to do. So we made a list of the things we like to do that are also wheelchair accessible. Let's see. We like the theatres and museums, we like art galleries and shopping centers. Next, we got out a map and looked at the cities around us.

I've always wanted to go to the Rock and Roll hall of fame. Well, not always, but since Madonna was inducted. She and I could chat now, one hall of famer to another. And then we looked at a few other cities that had attractions that we'd knew about but never seen. We've been to all these cities, lectured there, but never had time there. In all from Toronto to the outermost city, 16 hours. The longest drive between cities, 7. We could hop from city to city and then drive back. Easy peasy.

Since I became disabled I have really tried to let my disability inform me but not restrict me. Well, in fact, it kinda does - but only if I do that 'old me' thinking that we keep teaching people to eschew. It's time for 'new me' and maybe a 'new me' vacation.

Cripples Take To The Road: A Series of Blog Posts Coming Soon

Carded

When we got home from work yesterday we simply had to go out. The sky was a spectacular blue, the weather warm, it was the kind of afternoon that one had to go out for a stroll. I didn't even wear a jacket and Joe had tossed on something very light. We went over to the new Longos grocery store in our area and discovered that it was accessible to many but not to me. We exited from the somewhat embarassed situation with me never understanding why I'm embarrassed when employees of an faux accessible store aren't.

We decided to walk over to the bank and get Joe's new bank card operational. As we arrived there was a homeless guy there, a little drunk, and I was steering respectfully around him to get in through the door. He caught sight of me and with that blistering humour that drunks have, said, 'Hey, it's a wide load.' The others turned to me and all burst into laughter because, you know, it's a pretty funny line - when you are drunk.

I don't wish to go out by those wits again, I' was pretty sure that 'two ton Tony' was next on the list of HA HA's. So we continued in from the bank machine to the mall picked up a lottery ticket and then went back out into the street. On our way home I noticed the young man who I usually buy the 'newspaper' from. It's a paper that's put onto the streets so that people don't have to beg, they can sell the paper and simply keep the money.

He's a fragile person. When he speaks you can hear the broken parts of his heart all beating different rhythems and as a result his speach has none. I take the news paper and he takes the two toonies I offer him. He whispers to me, 'Thank you, you are a kind and dear man.'

At Vita, my place of work, we are about to begin a study in intentionality. How we can, from supervisor to direct care can become intentional in how we carry ourselves through the day. We've created little wallet cards, with five affirmations and five self evelauation questions. It's a brand new approach for us and we are interested in seeing how it works. I had brought one of the cards home from work. Before going out I read it, then placed it in my wallet.

I went into a sunny day, ready to be intentional in my caring. And it worked. For me, today, it worked. I know in my heart that if it had been an ordinary day of discovering a brand new store to be inaccessible followed by others who saw me as a source of humour. My heart would have been so guarded on the way home that I could not have taken a moment to be kind.

Maybe intending to kindness is the first step in caring well about others. That was a trial run. The research begins in a couple weeks.

Lions And Tigers and Walkers, OH MY

It was the happiest smile I've seen in ages. Completely genuine. Reflecting 100% un-self-conscious happiness. Joe and I were headed south on Yonge street and the wind was blowing a bitter cold. I'm sure I was frowning as I headed into the wind, Joe had his head down and therefore noticed him first.

Well, noticed not exactly him, but the tip of his cane. I noticed Joe's gaze change and I looked and saw the white cane, first, and then the huge bright smile next. The young man may have been just over twenty. He was with someone who was obviously training him to use the cane to get around the neighbourhood. He was barrel-assing up the street with a real abandon in his walk. She, the trainer, was spectacular. She did nothing to slow him or diminish the moment for him.

As he passed us he said to her, 'I'm on Yonge Street now aren't I?' She said 'Yes.' He said, 'Heading North.' She said 'Yes,' and he WHOOPED his excitement. It was wonderful to just be there, invisibly, as this young man experienced the freedom that is hidded behind the stereotype of disability.

I remember my butt sitting down in my wheelchair for the first time. Then I remember, moving. In that moment the 'lie' about wheelchairs was revealed to me. I imagine, but do not know, that that young man felt that way once he learned to use the white cane in his hand. The white cane should not ever be seen as a symbol for blindness, it should be seen as the symbol for freedom, for Independence, for walking North on Yonge Street with glee.

Then I was having a sip of tea and while waiting for Joe to go pee. This is an increasingly frequent way we spend our time. A woman was approaching a friend of hers. I smiled to myself because it seemed like a comedy sketch. Two old friends, each on walkers, approaching each other. If music had been playing, they'd have to have gone round the score a couple of times. He had a tee shirt on that said, 'Kiss me I'm Irish.'

When she got up to him she pointed to his shirt and said 'That's a lot of blarney!' He grinned, reached down and put the breaks on his walker and then leaned forward on the handles and let his legs fly in a jig. They both laughed and he got his kiss.

A walker shouldn't be seen as a symbol for aging, it should be seen as a symbol of freedom, movement and determination.

Here's to canes and to walkers and to wheelchairs. Here's to the way we move! Here's to the freedom that lay hidden behind the fear of disability. Here's to the reality of disability that lay hidden behind years of misconception.

White canes, worn walkers and powerchairs, oh my.

!!Contest!!

We have a real, down to earth, contest for Rolling Around in My Head readers. I've been working on a new book and it needs a cover designed for it. We were talking about it today and trying to come up with ideas for a design or an image that catches the theme of the book. The book is about working to keep people safe within systems. The idea we want to convey is the sense you get when you are at home, snuggled in and feeling safe.

Mike and I tossed around ideas, he wasn't impressed with mine and I didn't like his. As we had come to a stalemate he said, in a moment of inspired brilliance, 'Why not ask your blog readers to come up with some ideas as to what images or pictures would portray that feeling. We could offer the winner the first off the press book as a prize.'

I thought that was a marvelous idea. I know the readers here to be creative, inspired and talented people. Who better to ask. So put your thinking caps on. You can put the ideas in the comment section or you can email them to me. We'll choose a winner if we find an idea that we are going to go with - next Wednesday. So you've got a week. Get thinking!

John: Transcribed

Thanks to Tessa Armstrong, wonder neighbour, who transcribed today's YouTube video for us. I came home from work today and there it was in my email. I hadn't even asked her. How kind is that. So for all of you who need the transcript, here it is. Thanks Tess!

John lived on the same ward that Phillip did and as I was working there he is the first person, although I didn’t know the work at the time, that would be said now be suffering from reputationitis. He was the person whose file I had to read first, and the person whom everyone was most concerned about. He had this incredibly huge reputation for violence and he was an interesting guy because he paced a lot and he was never really comfortable in his own skin.

When others would come and sit and watch television or engage in other activities, John was interested in none of those things. He would just keep moving and he moved around the ward constantly, and as much as I knew that it was my job to make contact with him, as it was my job to make contact with all of them, I didn’t really try. The reason I didn’t try was that I was really really frightened of him. The file had all of these reports of all of this violence and all this staff that he had beaten up over time, and all these people he had hospitalized, and all these people that he had really hurt, and I just didn’t want to be amongst their number. I have never been particularly physically courageous and never ever would be mistaken for being brave. So I didn’t make contact with him, and the day that he had to go for treatment and that I was assigned to travel with him, I was very very concerned.

Well, we traveled in an ambulance from the institution and we went to the, I guess it would be the hospital for people with mental illness. And I didn’t know what they meant by treatment. They just said I was to be his staff accompaniment. And when we got there and we started walking down this hallway, accompanied by somebody wearing green, it became very clear that something medical was going to happen to him, that something psychological had been tried I guess, and maybe they just thought it would fail. So we brought him into this room where there was this bed, and they laid him down on the bed and he started just very quietly to say “No, Please, Don’t”. I still at this point did not know what was happening, so I asked somebody and they told me that he was a regular there, that he came and he got this “shock therapy”. So they strapped him down, and then they gave him this shot that made him go all limp and then they ran electricity through his body. And I remember that the only thing that changed in him was his toes. It’s such a weird thing to remember about such an act of violence, it was his toes. And they just bent, like that, and then they came back up.

When John was conscious again, he was very scrambled and very inarticulate, not that he ever spoke that much. And I got him back into the ambulance that had taken him there, and we drove him back to the ward. I always felt that I had been complicit in this incredible act of violence again this man, who I realized, all these years later, I never actually saw perform an act of violence. I never actually saw him hit anyone, break anything. All I saw him do was walking around the ward and be uncomfortable in his body and have angular shoulders and a strong, jutting jaw. And we were all afraid of him.

What makes this interesting I think is that there was one kind of person who wasn’t afraid of him, but he wasn’t somebody who was on the team. This was a guy who came, I don’t remember what the routine was, but every second or third morning, he came very very early in the morning. He had those machines – he worked for the janitorial crew -- and he had this big machine and it had all this stuff that polished the floor. And he went in this circle. You see these television programs about people who walk mazes in churches as a means of doing something spiritual. It was kind of the same sort of thing because he very slowly and methodically walked around the ward and polished the floor. John would get up very very early in the morning when this fellow was on and would just walk with him, and the two of them would chat.

John had this thing that really disturbed all of us and that was his wallet. You see his wallet was huge, it was the size of a Whopper. He would take it out and he would look at the wallet and he would talk to the wallet, cause he had all these pictures in there, and they were pictures of people. They were people who had been ripped out of magazines and newspapers. They were all characterized by having very pleasant faces. These were people who were paid to look nice and to look friendly. John would looked at these people and he would rip their pictures out of the paper and he would put them into his wallet and then immediately forgot that he had ripped them out of a newspaper and that he didn’t know these people. He would talk to them as this one is my mother, this one is my family, and this one is my brother and this one is my cousin, and he built this whole family. His family was incredibly important to him and that wallet was with him at all times, even when we went to the hospital and that act of violence was perpetrated against him, he had that wallet with him and he carried that wallet very carefully back to the institution with him. He loved that wallet and he loved those pictures. He wanted to talk to us about the people in those pictures but nobody would talk to him about it because we were all told that we were encouraging delusion, forgetting of course, that in life delusion might be one of the most sane things that you can do, when you don’t have a family or the family that you do have doesn’t visit and doesn’t care and is afraid of you. So he would talk to these pictures.

The only one that would actually look at the pictures with him was this guy who walked around the ward, polishing the floor and this guy who wasn’t paid to work with people with disabilities, who was paid to care for them. He would stop and they would look at the pictures together and John would tell him stories about this wonderful father who loved him, and this wonderful mother who cared for him and his brothers and his sisters and his family who were in the wallet and they didn’t’ need to visit him, because they were there with him, all the time. And then when the floor was finished and it was all done, this fellow would thank him for spending time with him and say it’s kind of boring doing these floors all by myself, and it’s kind of nice that you walk with me, John. I really appreciate it.

I spoke to this guy, and I asked him whether or not he was afraid of John and he said “Of course not”. He wasn’t afraid of John at all because he had never seen any violence from him and he had never seen anything that would cause him fear. But I guess that’s because he hadn’t read the file, and he hadn’t been trained in the ways of wariness around people who are lonely and people who carry wallets full of pictures of people who matter to them.

John: On YouTube

Welcome to Video Two on You Tube. I apologize to my readers who need subtitling. I'm trying to figure out how to do this. If any one knows how, please let me know. Better still, if anyone wants to volunteer to transcribe or to caption, I'd be very interested in talking with you.

The story here is one I've never told out loud before. I thought about it long and hard before turning on the camera. There are times I'm searching for words because the story is new to telling. I could have re recorded it but decided that it's ok here that the stories are told directly from memory.

Please leave comments here or there. Let me know if you are enjoying the occasional YouTube post.

Word Perfect

Sometimes I have a bit of the 'camp counsellor' in my personality. Indeed, if I may say so, I was a decent camp counsellor when I was younger version of myself. We had planned to go to the St. Patrick's Day parade yesterday with our neighbour Tessa and then for a cuppa tea. I decided that we should do some crafts too. A long while back I bought this kit for making leather bracelets. What's unique about these bracelets is that you are given a tube full of four sided beads that have words on them. So you can make up phrases and then string them onto the leather. Because you might want to use a word that they've not included they also give a healthy number of individual letters.

I was thinking about what I'd put on my string, I have some favourite expressions, like 'gob smacked' which I could spell out. Then I thought that as I am of Danish and German heritage maybe I could find some words that are unique to those languages and thereby honour my background - something I never do. So I began looking for cool words in different languages and I found some humdingers. So, today's post is complete and totally just for the fun of it.

Words That I Wish We Used in English (in no particular order)

Litost (Czech)

a state of torment created by the sudden sight of one's own misery.

I have to admit that I burst out laughing, inexplicably, when I read this word. What a wild word to have at your avail! Oh. My. Even knowing that those moments are possible is enough to give me goosebumps.

Handschuhschneebalwerfer (German)

A string of words that translates to 'somebody who wears gloves to throw snowballs' and is used to describe cowards.

Two things here, first, I'm peeing myself imagining what spellcheck is gonna do with that word. Second, I don't know anyone who doesn't wear gloves while making snowballs. I guess I hang with sissies.

Shitta (farsi)

Leftover dinner eaten for breakfast.

And it kinda often tastes shitta too!

Mata ego (Rapa Nui)

Eyes that reveal that someone has been crying.

This got to me out of the sheer poetry of the idea behind the words. I knew immediately the look being referred to ... I'd love to be able to express my concern for someone by describing to other's those eyes.

Didis (Indonesian)

To search and pick up lice from one's own hair

OK, right now you are scratching your scalp aren't you. Icky, icky, icky. What did you do last night? All I got up to was a bit of didis. Is there a words for having them as snacks?

Ngaobera (Pascuense)

A slight inflammation of the throat caused by screaming too much.

Yep, there's someone easy to love.

Now the next section has four sexual words that I thought, OK really, were hysterical. Really, really hysterical!

Marachastra prayoga (Sanskrit)

men who worship their sexual organs

We have a word for that in English too, men.

Koro (Japanese)

The hysterical belief that one's penis is shrinking into one's body.

OK. OK. OK. I can imagine that these guys never get a decent night sleep. Waking up and checking every few minutes. Wild.

But my favourite two words ...

Senzuri (Japanese)

It means male masturbation but it translates literally as 'a hundred rubs'

and

Shiko shiko manzuri (Japanese)

This is female masturbation and it translates literally as 'ten thousand rubs'

And finally, just to have a disability word in the bunch ...

Angushti za'id (Russian)

It means someone with six fingers.

I'm guessing it also means 'someone from Chernobyl'.

I've got maybe 5 pages of this stuff, let me know if you enjoyed it and I can do a couple more over the course of a year.